Introduction: The World Health Organization estimates that up to 70% of sickle cell deaths in sub-Saharan Africa are preventable by implementing measures that include early diagnosis, information, education and prophylaxis of infections. In the city of Kisangani, in the Tshopo province of the Democratic Republic of the Congo, identifying difficulties in access to care will help guide interventions to fight sickle cell anemia. The aim of this study was to identify the barriers preventing sickle cell patients from accessing care in the Democratic Republic of Congo.Methods: This cross-sectional study involved 158 sickle cell patients who consulted at least once in one of the general hospitals in Kisangani in 2010. The interview guide included questions about social representations and knowledge about the disease, perceptions and knowledge of the provision of health services and financial accessibility to health facilities.Results: For 44.9% of the study participants attribute sickle cell disease to demonic origin or divine curse. The cost of care associated with sickle cell anemia is unaffordable for 93.6% of participants. The 77.8% and 44.9% indicated that it is in the church and in traditional healer's places respectively that the care is more prompt than in formal health system. However, only 22.8% patients in health facilities felt that they waited a long time before commencing treatment.Conclusion: Sickle cell control in Kisangani should focus on raising awareness, information and education of the population, sickle cell anemia patients and their families. In addition, centers for the comprehensive management of sickle cell disease supported by the state should be developed. Similarly, research on medicinal plants used by healers is necessary.

Introduction: The World Health Organization estimates that up to 70% of sickle cell deaths in sub-Saharan Africa are preventable by implementing measures that include early diagnosis, information, education and prophylaxis of infections. In the city of Kisangani, in the Tshopo province of the Democratic Republic of the Congo, identifying difficulties in access to care will help guide interventions to fight sickle cell anemia. The aim of this study was to identify the barriers preventing sickle cell patients from accessing care in the Democratic Republic of Congo.Methods: This cross-sectional study involved 158 sickle cell patients who consulted at least once in one of the general hospitals in Kisangani in 2010. The interview guide included questions about social representations and knowledge about the disease, perceptions and knowledge of the provision of health services and financial accessibility to health facilities.Results: For 44.9% of the study participants attribute sickle cell disease to demonic origin or divine curse. The cost of care associated with sickle cell anemia is unaffordable for 93.6% of participants. The 77.8% and 44.9% indicated that it is in the church and in traditional healer's places respectively that the care is more prompt than in formal health system. However, only 22.8% patients in health facilities felt that they waited a long time before commencing treatment.Conclusion: Sickle cell control in Kisangani should focus on raising awareness, information and education of the population, sickle cell anemia patients and their families. In addition, centers for the comprehensive management of sickle cell disease supported by the state should be developed. Similarly, research on medicinal plants used by healers is necessary.